Person Centred Planning and ASC Organisational Challenges

1
Person Centred Planning and ASC Organisational
Challenges

• Lynne Moxon 2009

2
Autism Autism Spectrum Disorder (ASD)

• Autism/ASD lifelong severe
• neurodevelopmental disorder with a
• considerable functional and financial impact on
  the individual and family
• ASDs are unique in their pattern of deficits
• and areas of relative strengths

3

• We now know that the brains of people with autism
  are structurally and functionally different from
  those of other people.
• It is thought that the connections between some
  areas might be less than is needed to coordinate
  multiple ideas and in others over-connected
  resulting in overload or hypersensitivity
• Some areas that register emotions do not work in
  the same way as the rest of the population.

4
Asperger syndrome

• is not a mild form of autism
• It is an often severe form
• of ASC, yet one that is
• frequently associated with
• average or above average
• general intelligence.

5
How common is autism?

• Prevalence of autism first estimated at 0.4/1000
  (Lotter, 1966)
• 2000/2001 2-4/1000 and 6-7/1000 for all ASDs
• 2003 1/150 (Gerlai Gerlai)
• 2009 1in 100 NAS

• Growing at a rate of 10-17 per year
• No racial or socio-economic differences
• ASA growth comparison during the 1990s
• US pop increase 13
• Disabilities increase 16
• Autism increase 172

6
(No Transcript)
7
Youre having a laugh!........Commissioners
give up on trying to count the number of people
with autism.
8
Supporting People with Autism through Adulthood
(National Audit Office, 2009)

• Quotes Knapp et al, The economic consequences of
  autism in the UK, Autism costs the UK economy
  28.2 billion per year (2.7 billion for
  children, 25.5 billion for adults) ........ 59
  of cost is services, 36 lost employment, 5
  family expenses.
• This report suggests that as more individuals
  with ASD can be diagnosed and supported, cost
  savings should increase.

9

• The process is very complicated
• Everyone is very busy
• Everyone seems to know what they are
• doing
• Everyone is clearly very competent
• at their own particular task
• Some balls manage to exit the process
• but what happens to them? If you look
• carefully, they often enter again on
• the opposite side
• There are several entry points

• Some tasks are automatic, some require a
  specialist to oversee them
• The balls are subject to interventions, but
  this is not coordinated
• All the balls are seen as identical they are
  not assigned any value
• To an outsider, the whole thing is a mystery
• It is difficult to collate any meaningful data
• There is a lot of waste

10
NAO survey of 1000 GPs

• 13/507 children may have undiagnosed ASD (half
  high functioning)
• 24/1722 adults may have undiagnosed ASD (half
  high functioning)
• Adults with undiagnosed low functioning autism
  referred to...........
• 54 adult MH services
• 39 LD services
• 8 specialist autism services
• 8 not sure
• 4 no services

11
NAO survey of 1000 GPs

• Adults with undiagnosed high functioning autism
  or Aspergers referred to...........
• 64 adult mental health
• 19 LD services
• 10 specialist autism service
• 12 not sure
• 7 no services
• 71 of GPs provide no ongoing support,
  monitoring or condition management for ASD or
  Aspergers

12
NAO survey of 1000 GPs

• Confidence that patients with autism are
  receiving appropriate and adequate care..........
• 17 not at all
• 53 not very
• 28 fairly
• 2 very
• 80 of GPs feel they need additional guidance
  and training to identify and manage ASD

13
A diagnosis of ASD is triggered by the failure to
adapt to a new social challenge.

• Such challenges occur
• during the pre-school years, when the child first
  meets others in playgroup or nursery
• on going to school on moving into a more
  structured classroom setting at 8 or 9 years old
  
• on transferring to senior school and having to
  deal with more demanding peer relationships
• on leaving school and having to find work or cope
  at college.
• However, an increasing number of adults who have
  failed to
• obtain employment after higher education, have
  failed to adapt
• to job changes, or whose marriages are failing,
  are querying if
• their difficulties, too, can be attributed to AS.

14
Commissioning

• Wheatcroft (GAP, 2005) looked at commissioning
  attitudes in the Northwest.found astonishing
  levels of ignorance of ASD among commissioners
• MH/LD commissioners and providers have
  historically disagreed as to who should meet the
  needs of these clients ? lots of inequalities
• Says both sides have political and financial
  vested interest in maintaining a distance from
  the argument
• Very little in MH NSF or valuing people
• Need different solutions in different localities
• Cannot assume expertise in LD services

15
Being person centred is about looking beyond
service land.
We need to support people to live the way they
want to.
16

• What would it take for this person to have an
  interesting, fulfilling life where they can get
  to know people who would become their friend and
  be able to make a contribution to their local
  community.

17
People with ASD -

• Typical patterns of strengths and weaknesses
  that may influence their ability to benefit fully
  from the PCP process

18
(No Transcript)
19
Mental Capacity Act

• John has Asperger syndrome. He sometimes gets
  very anxious in unknown situations this can make
  it difficult for him to make a decision. His
  social worker needs to know which day service he
  would prefer to attend she asks him this at the
  end of a visit to both services. Johns anxiety
  levels are high because he is in a strange
  environment and finds it difficult to absorb the
  information the social worker is giving him. To
  help him make the decision, the social worker
  needs to take steps to help him make the
  decision. She takes John back home (an
  environment he feels less anxious in) and
  provides him with written information about both
  day services to help him remember the options.
  Johns anxiety levels decrease and he is able to
  make the decision about which service he
  preferred. He did not lack the capacity to make
  the decision.

20
Anxiety disorders in ASD

• Occurs with changes in routine or unpredictable
  routine
• Includes generalised anxiety disorder, panic
  disorder, phobias, PTSD, OCD
• Impact on ability to function
• PTSD few reports linked to abuse
• Dr. Jane McCarthy Institute of Psychiatry

21
I must not

• Things that make me unhappy.
• What should not happen in my life?
•  

22
Things that make me unhappy we need to add

• It is important that those spending time with
  Graham know what makes
• him unhappy in order for him to have a good day.
• If my personal space is invaded, I will let you
  know if you are invading my personal space by
  saying please leave now or enough.
• If I have unfamiliar staff with me in the
  morning.
• Having staff that I dont know who dont know
  me.
• Being woken up when I am still tired.
• If there isnt what I want for breakfast.
• If someone tries to get me to do something that I
  dont want to do.
• People putting demands on me. or pressure on me.
• If I am not given my own space time.
• Having too many people in my flat.

23

• Task demands being put on me.
• I do not like injections at all.
• There not being food in that I want to eat.
• If someone does not understand what I am asking
  of them.
• I hate going for walks for no reason, it has to
  be meaningful to me eg, going to the cinema or I
  like to have a treat at the end of it eg, a drink
  or something I like to eat,
• I hate being anywhere that is too noisy or
  crowded.
• Going places that I am unfamiliar with (I often
  refuse medical appointments).
• Going anywhere that I am unfamiliar with. I dont
  like going on trips, unless it is somewhere that
  I like know, like McDonalds.

24
Mental Health Needs in ASD

• Depression up to 37
• Anxiety disorder up to 50
• OCD up to 40
• Tic/Tourette up to 29
• Catatonia ?17
• Psychosis
• ADHD up to 30
• Clinically abnormal EEG up to 25

25
Mood disorder and other difficulties diagnosed
in 2006 ESPA college cohort
26
Risk factors for Mental ill-healthPsychological
Social

• Self esteem
• Stigma/social disability
• Loss impact of life events
• Teasing/bullying
• Loneliness-rejected by peers, wanting friendships
• Deprivation
• Family environment
• Dr. Jane McCarthy Institute of Psychiatry

27
(No Transcript)
28
My Routines
29
Things I like to do

• I like to make lists, this is very important to
  me I like to write everything down in list form.
• I like to make lists of the things I am doing eg
  What I will be doing on that day or that week.
• I like my own space, so living in a flat is good
  for me. I still get to see other people when I
  want to because they live next door and
  downstairs.
• Watching films, All Disney films, mostly
  cartoons. Inspector Gadget, Wallace Grommit,
  Charlie the Chocolate Factory,The Big Friendly
  Giant, Dennis the Menace and Clifford the Big Red
  Dog.
• I collect Disney D.V.Ds. I have lots in my T.V
  cabinet.
• I always keep them looking tidy in their right
  boxes.
• Going to the shops.
• Having my feet tickled by staff. (I will ask
  staff to do this)

30
Autism is normality with the volume turned way
up. Donna Williams, 1994
31

• The kitchen had fluorescent lights and yellow
  walls, one of the worst combinations ever. Even
  from the doorway I could see light bouncing off
  everywhere. In my tense state, everything climbed
  to hyper, vision included. There were no whole
  objects in the room, just shiny edges and things
  that jumped with the bouncing of light. Dr. Marek
  wanted me to go in there and be blind. Forget it!
• Donna Williams, 1994
• Somebody Somewhere

32
Questions that need to be answered?

• The things on this list might be
• What would it take for . to have continuity
  of regular staff teams?
• What would it take for . to have weekly
  visits to ..?
• Things I want to happen that are not happening
  right now.
• Things that people disagree about.
• Things that I am worried about.
• Things that other people are worried about.

33
Autism

• Begin with strengths and needs in relation to
  communication, flexible thinking and social
  interaction
• Only through understanding patterns of thinking
  and communication strengths we may learn what is
  important to a person and provide support
  important for them in daily life

34
It is useful to work with service users to
develop..

• Awareness of like and dislike in many situations
• Successful choice making
• Ability to evaluate and express preference
• Expression and understanding of expectations

35
The Challenges

• Supporting the typical patterns of communication
  and thinking to elicit real meaningful
  information
• Is consideration of object and environment based
  needs/wants enough? ..what about support needs?
• Danger in reinforcing rigid patterns of thinking
  .this is what I need!

36

• Continually trying to work out what to do and
  what to say is like doing quadratic equations in
  your head.
• Temple Grandin 1995

37
Key components of aspecialist autism service
Not just based on triad need deeper
understanding based on empathy
May need to be directive and paternalistic, and
not offer too much choice
Employ the right staff
Consider Special diets and holistic concepts of
health
Create the right physical environment
Need focus on systems of attention and arousal
Use innovative ways of facilitating and
augmenting communication
Ensure the service is fully culturally aware
May need to be age-inappropriate at times
Find the true meaning behind ritualistic and
repetitive behaviours shown by clients
Need focus on sensory and motor needs
Ensure sexual needs are addressed
38
Whether or not someone chooses to use person
centred planning, we still need

• Really good managers.
• Enough money for services, used in the right way.
• Staff that will listen to what people are saying.
• Finding better ways of supporting people, in the
  way that they want.